There are more than a dozen disease-modifying therapies available for treating MS. Some are shots, some are infusions, and some are pills. Some are more effective than others.
The marketing intelligence company Spherix Global Insights regularly surveys which of these treatments are being used by neurologists and what’s influencing their selection. Here’s what the latest Spherix quarterly survey shows about what’s being prescribed.
Just over half of the 100 neurologists surveyed say they’re choosing a pill as the first disease-modifying treatment for relapsing MS no matter what level of disease activity a newly diagnosed patient has.
But for the other half of surveyed neurologists, the choice for treating MS in a new patient is influenced by the level of disease activity. If the MS isn’t very active, 54 percent of those doctors preferred prescribing pills, such as Tecfidera, Gilenya, and Aubagio. Thirty-nine percent preferred injectables, such as Copaxone. If the disease activity is high, however, their treatment choice is one of the meds considered to be highly efficient, such as Gilenya, Tysabri, or Ocrevus.
As someone who suffered “needle fatigue” using Avonex for many years, followed by several years of Tysabri infusions, then Aubagio and finally Lemtrada, I can tell you that I prefer an oral med. I think most MS patients would. But I also prefer the kind of treatment that’s likely to produce the best outcome for me.
I prefer a pill, but …
I used the oral med Aubagio for a short while between Tysabri and Lemtrada. It seemed to work as well as Tysabri and better than Avonex. But my current Lemtrada treatment seems to have worked the best. It certainly wasn’t the easiest or the most comfortable treatment, and its potential side-effects were the scariest. But even at 70 years old, I was willing to try a treatment that might stop my MS dead in its tracks. Lemtrada treatment even holds out the possibility that some of my symptoms might be reversed. The potential benefits outweigh the possible risk and the discomfort.
Treating MS – my heart or my head?
When I was using Avonex, I hated jabbing myself in the thigh once a week with a needle that seemed far too long. But it offered me the best chance of beating my MS. I think if I had the choice back in 1996 of a shot or a pill, my heart would have chosen the pill. But if the shot was more effective, I hope my head would have chosen the shot
Someone’s treatment choice, of course, should follow a serious patient-doctor discussion. When that discussion is held I hope that, for both doctor and patient, efficacy trumps ease of use.
(A version of this post first appeared as my column on the Multiple Sclerosis News Today website).
Featured photo: Marcelo Leal on Unsplash
Hi Ed, as someone with a relative who has had a positive experience with Lemtrada, I am confused by the negative perception with Lemtrada. You had a positive experience with the drug and your post is qualified with disclaimers. There is now 11 years of data on Lemtrada users and between 60-70% still no longer take any MS drugs. Moreover, there was 1 death (not directly tied to Lemtrada) and no other serious injuries, and yet, doctors prescribe Tysabri where there are 700 PML deaths over Lemtrada. It makes no sense to me. I am on a Lemtrada facebook group and the question was asked: would you take Lemtrada again. 86 out of 90 patients said yes. This is the closest thing to a cure for MS and yet most patients are afraid to even consider it.
Hi Cyrus,
Thanks for taking the time to comment. After reading what you wrote I re-read my post. I really can’t see what you read that left you with the impression that I have a negative view of Lemtrada, or that I qualified the fact that I believe I made the right choice in selecting that treatment.
I wrote that I’d prefer a pill but “I also prefer the kind of treatment that’s likely to produce the best outcome for me.” I also wrote that “the potential benefits (of Lemtrada) outweigh the possible risk and the discomfort (for me). I concluded that, when deciding on a treatment, I hoped that efficacy would trump ease of use.
I’m on two Lemtrada Facebook groups and, like you, it troubles me that many people with MS (I don’t think it’s most) are afraid to even consider it. When I’m on those groups I try to promote it while also trying to provide an objective view of my experiences.
The bottom line is that I favor whatever treatment is the most effective for each person.
Regards,
Ed
Awesome, someone my age who has tried Lemtrada. I’m 66 and have recently been diagnosed with MS. My version morphed in from a spinal cord injury that de-myalinated my cord from C3-C7. 10 months later I have MS, go figure, I tried most of the drugs you mentioned with no relief, so my neurologist has prescribed Lemtrada, since we want to stop the progression. So far I have no brain lesions, and I’d like to keep it that way. My main excitement lies with the ability to ask questions to someone my age about the side effects, the fatigue, but mainly this, “How long did it take for you immune system to reboot to a level sufficient to safely be in public? I’m starting the infusion next Monday and I’d love to be able to continue as a high school golf coach in April. Am I dreaming??? Thanks in advance for your help.
P.S. You’re a good writer.
Damian Neeld
Carmel, IN
Hi Damian,
Thanks for your note.
There’s no one-size-fits-all answer to your question. Just as is the case with MS symptoms, it’s different for different people. But my experience is that, with good hand washing and by staying away from obviously sick people and crowds in places like theaters, you should be ok. Less than a month after my first infusions I drove from Maryland to Florida, which meant public restrooms and staying in hotels two nights. I overdid it and I think my fatigue led to opening myself up to a strep infection. But it was quickly, and easily, handled with a round of antibiotics. Oh, I also spent Christmas with our grandkids who, at the time, were 2 1/2 and 1 1/2 years old. In other words, little germ factories. I didn’t wear a mask, but I was careful about washing. I think that by April you shouldn’t have a problem getting out on the links but that’s a personal, not a medical, opinion.
If you haven’t yet done it, I’d suggest you go back and read my earlier Lemtrada posts. There are about half a dozen of them and they’ll give you a pretty good idea of my journey. You might also check the Lemtrada groups on Facebook. If you do, however, keep in mind that people who have negative experiences are more likely to post than those with positive. You’ll definitely get a range of opinions and experiences, there, but you’ll also be subject to information that may not be accurate.
Good luck with your treatments.
Ed